Eenie, Meenie, Miney, Mo – These HS Lesions Have to Go
Last updated: January 2023
From March of 2020 until the time of this writing, October of 2021, has really pushed my limits. It’s not as if I haven’t been through difficult times before. I have that whole stay-at-home-alone-and-only-communicate-electronically-thing down, thanks to being officially disabled as of July of 2015. I know how to spend time by myself. I know how to fill my days. In that way, I have had the advantage.
My body picked a horrible time to rebel
But boy oh boy, my body picked a really inconvenient time to rebel. First, I had been planning on having some especially troublesome HS lesions removed surgically, all in my groin and labia area. They had become thick with scar tissue and constantly painful. With a couple of them, if I pushed on one end, a small amount of pus would come out of the other end like some sort of sick whack-a-mole game. They would never drain properly and I had given up on them healing completely.
I was also experiencing horrible abdominal pains and could actually feel something sort of heavy poking out of my right lower abdomen. In addition, I lost sensation in portions of my groin area and was experiencing urinary issues. Sometimes the pain was so bad that I would be woken up in the middle of the night.
Feeling left out, both of my feet decided to make their presence known in a whole new way. It felt like I was walking on marbles or bubble wrap. At times I could see what looked like little oily bumps protrude out of the backs of my heels.
The pandemic pushed everything back
I started going to all of these doctors – a surgeon who had a lot of experience working on HS patients, a gynecological surgeon, an orthopedic surgeon – all the while not knowing if I would be able to do anything because of restrictions on surgeries as a result of the pandemic sweeping across the country. I did a lot of calling and talking and faxing. Everything was pushed back by approximately 4 months.
Finally, I was given the all-clear to start getting everything taken care of. I knew that I wanted to have multiple lesions removed (but not an entire area of skin taken out, as is sometimes the case with HS). It turns out that I was growing 2 masses in my pelvis: one the size of a softball, and one the size of a golf ball. They were wrapped around my ovaries and fallopian tubes, so everything had to be removed. And both of my feet needed operations to repair torn ligaments. (Side note: I didn’t feel the torn ligaments. I felt the fat that was being strained out of my feet from the fat pads on the bottoms, which showed up on the MRIs, but the torn ligaments that happen because of one of my co-morbidities didn’t register in my brain at all.)
Which surgery would I start with?
This was quite a dilemma. First, I had to think about which surgery to do in case I only had the opportunity to do one surgery. It was a legitimate concern. It seemed like every day the restrictions on surgeries and who was allowed to walk into a hospital were changing. Which of the four surgeries was the most urgent?
Second, if I could do all of the surgeries, which one should I start with? I had to think about what it would be like if I got the masses removed from my pelvis and if I still had the HS lesions. Would I be recovering from surgery and dealing with the pain from those lesions and trying to dress those, and also dealing with surgical pain? If I did my feet first, which would take 3 months to recover from on each side, what would it be like to also have to deal with the HS lesions?
The hidradenitis suppurativa lesions had to come first
Everything kept coming back to the HS lesions. I knew I needed to make them priority number one because dealing with everything after that would be made so much easier. I know, I know – but what about the sporting equipment I was making in my pelvis? I figured it could wait a little longer, even though I was pretty uncomfortable. I had tested positive for ovarian and pancreatic cancer. Ultimately, I had to decide if I had enough signs to push forward to take care of the pelvic masses first, or if I really needed to take care of the HS lesions before everything else.
I got the surgery done to remove the troublesome HS lesions. My surgeon was great, and with his experience, he knew not to close them with a flap or stitches because HS loves tunnels, and likely the disease would take hold in the same areas if we sewed everything up. This left me feeling like a bowling ball with great big gouges that were very painful to wash at first, but I knew I had to keep at it to avoid the operating table again for this area. The excised areas grew up and out like they almost didn’t exist. It’s amazing how well they healed.
I made the right decision
I did get the pelvic masses removed very soon after that – no cancer! – and my feet are taken care of as well. Oh, and I added one more thing: I just had a mass removed about a month ago from my stomach that was hanging right before where the small intestine connects. So I guess my food was high-five-ing this mass as it was passing through? That’s the only way I can think of it.
I think if I was dealing with these weeping, nasty, painful HS lesions while also recovering from these other surgeries, I would have had a really tough time. I believe I made the right decision to do everything in the order that I did, even though I took a chance on having the surgeries delayed again because of the pandemic.
How important is HS awareness to you?
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